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08/23/2010 03:09 PM

Is anyone aving check-ups in the UK?

Karly123
 
Posts: 6
New Member

Hi I recently been diagnosed with Li-Fraumeni. When speaking to the doctors about a check-up as a preventive measure they dont seem to be able or really want to offer much of a service and I am not wondering what was the point in being diagnosed! Have you had the same problem? Are you getting check ups? what are they doing? have they helped? Wink
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08/23/2010 06:43 PM
nitereina
 
Posts: 49
Member

Hi! oh I'm sorry you are enduring this! and yes there are things they can do...my siblings did not get preventative anything- i think this really impacted them and their prognosis. for me. I began mamograms (every 6-8 months) at 20 (am 33 now), vaginal ultrasounds, blood work, annual dermatology exam, annual endrocrinologist exam and blood work, at 30 i got my first colonoscopy and endooscapy (yes yuck), oh and annual urologist visit. (blood and urine check. i know its alot but it truly saved me...i had my mamo and it was clear. 8 months later i went back and 3 tumors were identified. they turned out to be super aggresive, small, and scary! i decided to have a variety of doctors for the fact that they specialize. my general doc is not a specilist plus they can know more and be able to have SUPER vigilance on you...

hope this helps

good luck


08/24/2010 05:08 AM
natcat
natcat  
Posts: 16
New Member

Hello, i have recently been diagnosed with LFS as well. its a pretty scary thing to be told isnt it? I am in australia and my g.p knew nothing about it.. u have every right to ask for screening, i was initially told that the doctors would do a few tests but after I insisted, they have agreed to give yearly MRI scan, colonoscopy, gastroscopy and detailed breast MRI. I was told that the MRI can bring up things (which it has..surgery required to find out) that might not be cancer and cause stress but i would rather get it early if it was anything. MY doctor actually spoke to her old boss in a hospital in england and supposedly they are doing some sort of screening over there for LFS..good luck..and find a doctor who takes u seriously..x

08/24/2010 03:20 PM
Karly123
 
Posts: 6
New Member

thanks for your help, I will put this information to my doctor and gentist which I am sure help. If anyone else is getting different or check ups then cont to post xx

09/13/2010 06:49 PM
merryjoy510
merryjoy510  
Posts: 8
New Member

Have to make this short as I am headed to bed, but can't emphasize enough the importance of routine check ups. I started doing MRI mammograms last year. Some drs said every six months, others said annual. I split the difference and went again nine months later. The first time they found some spots and did MRI biopsies, which came back fine. The second time they found a suspicious area and within a couple weeks it was diagnosed as breast cancer. I am only 28, but with LFS this was not a big surprise. The wonderful news was that it was caught at stage zero meaning it had not spread at all. They did a double mastectomy in March but there was no need for chemo and radiation!!! Praise God!!! The doctors told me it had grown from nothing to 6 mm in just nine months, which is fast, so doing the MRI mammogram saved so much grief and made this difficult time a little bit easier. You are your own advocate and you know your body well. Push for the tests you need... so many drs just cant understand the severity of LFS. Thats my two-cents worth Smile

09/13/2010 06:56 PM
merryjoy510
merryjoy510  
Posts: 8
New Member

PS - the list nitereina gave above is very good! These are the same tests I have been told to do as well... i do the dermatologist, endochrinologist, vaginal ultrasound, blood work (2x/yr) and mammograms (not anymore!). Haven't started the endscopy, but the dr says that is coming soon. She also said at age 30 to start that.

09/18/2010 04:05 AM
Dexma
 
Posts: 52
Member

If you are a girl, there are alot of exams you can do (as is apparent). However, for guys it's a bit harder. I myself just take blood exams with physical exam once a year. Just had my third yearly check-up and it was all good.

I don't want to risk extra radiation or false diagnosis. I'm in tune with my body and work-out four times a week. I can pretty fast tell if something isn't right (as long as it's not a brain tumor, but then hopefully my wife will assist). The best thing my doctor told me was to look for pains or aches that continue to grow with no obvious reasons. So I won't worry if my back hurts because I just shoveled a lot of sand the other day. But if my knee won't stop hurting and gets worse after two weeks even if I can't find the reason why the pain started in the first place, then I'll give my doctor a call.

I'm actually thinking of quitting the yearly check-up thing. I think I'll just have the bloodwork done and have the results via phone. I can check for any lumps myself.

One of the best things is to stay fit and know your body. Even if cancer hits, you are much better off surviving the surgeries and things like that.

But I hope that in time the screening methods will become better and better.


10/13/2010 02:50 AM
Karly123
 
Posts: 6
New Member

all your responses have been great, I am going today to see the genetist so hopefully they will take on board what other people are receiving and do somthing about it x

11/11/2010 11:47 AM
Jashchi
 
Posts: 10
New Member

Hi Karly 123

I have only just joined this support forum so have only just read your post. I live in Oxford, UK. I am 38 and since being diagnosed with Li fraumeni 3years age, I receive annual MRI breast scans, colonoscopies every 2/3 years, endoscopies every year and I see a specialist at the Royal Marsden (London) every year who monitors my situation and keeps me updated on Li fraumeni information. She is trying to set up a screening program which will involve a full body MRI scan but is still awaiting go ahead from the ethics commity. She also advised me to take vitamin C each day (500mg)and STRONGLY advises AGAINST MAMOGRAM or any other form of xrays that involves radiation as they can mutate the p53 gene further thus resulting in further cancers. It would be good to hear from you to find out how things have progressed for you since you posted this message.


01/30/2011 11:06 AM
chestnutgayle
 
Posts: 7
New Member

HI Jshchi iv not long joined to i am 31 and have LFS i have already had breast cancer i live in Scotland and have been getting mamograms dr say this will have no efected on me at all im also having mri and will be having double masectomy iv never had colonoscopies or endoscopies and have never been told to take vitamins my syrgon and dr are always arguing as they dont know much about lfs if u can give me anymore info on why u take the vitamins would be great thanks
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